Steve Crohn's lover died of AIDS in 1982, followed by many fiends, but every HIV test he took came up negative. Over the next decade, a dozen doctors could only wonder at his apparent immunity. Finally, in 1994, scientists at the Aaron Diamond AIDS Research Center figured out why. Crohn, a 54-year old painter from New York City, had inherited a rare anti-HIV gene mutation.
Crohn signed up as a guinea pig, and after much ado, Aaron Diamond isolated the gene--it causes a defect in the cells' CCR5 coreceptor, locking out the virus. This helped lead researchers to decode viral dynamics and also develop a test to identify others with the mutation. The center applied for and received exclusive patents on the genes.
While Aaron Diamond was not without precedent--The U.S. Patent Office has granted nearly 1, 000 patents for human genes--Crohn and another subject, Eric Fuchs, say that they should have been co-inventors. Plus, the patents bar other researchers from using the discoveries without permission.
Medical ethics see increasing conflicts in gene patents. "They raise especially acute moral issues because they can lead to lifesaving drugs,” said Robert Cook-Deegan, MD, of the Kennedy Institute of Ethics at Georgetown University.
Aaron Diamond director David Ho, MD, argued that they two men did not contribute intellectually." As for the larger issue, Ho said that the center is a nonprofit that does not stand to benefit financially. "In the unlikely event that the patent generates income," he said, "we will intend that all of the proceeds will be used to help support our AIDS research efforts."
Crohn, who is not pursuing legal action, only wants a little respect: "I was a volunteer in a research project. I was trying to help."